After last September’s public announcement at ECTRIMS in Stockholm, the Patient Reported Outcomes Initiative for MS (PROMS) comes to another key milestone. The mission of the PROMS initiative is to ensure an informed and quality participation of people with MS in the decision-making processes of research and healthcare regarding their treatment and performance.
The new Executive Committee and Scientific Steering Committee members of this unique initiative were announced during their inaugural meeting in Baveno (Italy) on 21st November, adjacent to the European Charcot Foundation’s annual meeting.
The Committees are representative of the global approach and scientific excellence of this project – which is jointly led by the MS International Federation and the European Charcot Foundation – by involving the most outstanding experts in the field of multiple sclerosis. The governance of the PROMS initiative includes different stakeholders representing the breadth of the international MS Community.
Peer Baneke (CEO Multiple Sclerosis International Federation, MSIF) – co-chair
Giancarlo Comi (President of the European Charcot Foundation, ECF) – co-chair
Mario Battaglia (Italian MS Society)
Tim Coetzee (National MS Society, US)
Hans-Peter Hartung (University of Düsseldorf, Germany)
Xavier Montalban (University of Toronto, Canada)
Jan Samyn (European Charcot Foundation)
Pamela Valentine (MS Society, Canada)
Awaiting confirmation from person with MS (tba)
Patrick Vermersch* (SCC co-chair)
Paola Zaratin* (SSC co-chair)
Scientific Steering Committee
Patrick Vermersch (Centre national de la recherche scientifique, CNRS, France) – co-chair
Paola Zaratin (Italian MS Society) – co-chair
Giampaolo Brichetto (Italian MS Society)
Gary Cutter (UAB School of Public Health, US)
Gilles Edan (University Hospital Rennes, France)
Gavin Giovannoni (Queen Mary University of London, UK)
Jeremy Hobart (University of Plymouth Faculty of Medicine and Dentistry, UK)
Robert Hyde (Biogen)
Letizia Leocani (San Raffaele University, Italy)
Robert McBurney (Accelerated Cure Project for Multiple Sclerosis, ACP, US)
Iris-Katharina Penner (University of Düsseldorf, Germany)
Fabio Pammolli (The Politecnico of Milan, Italy)
Bernard Uitdehaag (VU University Medical Center, Amsterdam, The Netherlands)
Awaiting confirmation of MS Society representative (tba)
As announced at ECTRIMS, the Committees will now guide the PROMS initiative to bring together the global MS community, people with and affected by MS, healthcare workers and researchers, the healthcare industry and many more, in order to maximize science with patient input at its core, and its impact on the health, healthcare and quality of life of people affected by MS. Through this exciting project, we will bring see an aligned view on PROs for MS for healthcare providers, regulatory agencies and healthcare technology assessment agencies (HTAs).
One of the first commitments for the new Committees will be to define the agenda and the composition of the work groups that will focus on the strategic priorities of the PROMS initiative, as outlined below.
Research, validation and development
• Identify the most important functional domains for people with MS that will lead to the prioritisation of functional domains. This is particularly important to ensure the validity of the content.
• Fill critical gaps in the knowledge base that hinder progress towards the development of a clear roadmap for research needs and progress.
• Research, validate and develop relevant PROMs.
• Identify current PROs and PROMs for use in clinical care and collected in regulatory and clinical records and advice.
• Satisfy the position of regulatory agencies on PROs and PROMs (e.g. MSOAC EMA document).
• Promote, coordinate, implement and support initiatives to validate and harmonize ODPs across cultures.
• Establish the current return on e-Health investments for all stakeholders involved.
• Enable patients, doctors and other stakeholders to benefit from the long-term benefits of e-Health.
• Translate standardized data into a performance measure (PRO-PM) that captures the most important results to improve long-term well-being.
• Enable PRO-PMs in innovative reimbursement models, regulatory frameworks and their algorithms to support clinical decisions.